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Hopefully a quick update as I dont really have much to update.

A quick backtrack as my video was awful. Last week I ended up back in surgery, less than a week after my last one. Turns out the area of trachea above my trach has now collapsed. This means that I have once again had to ditch the speaking valve, making speaking a lot harder. You would be surprised at the amount of times you want to talk, when your hands are tied. To speak without a speaking valve, I have to block the hole on the front of my trach, while I speak, then uncover it to breathe in again. This means, when your standing washing dishes, and someone asks you something, you can answer. Or if you touch something hot and shout ouch, the sound dosnt come out. It gets frustrating. Although I am once again having some issues below the trach, so often I can get short sentences out without covering it. As they are short sentences, I tend to sound like that kid of the Malcom in the middle show.

Anyway. I am seeing my surgeon this week to discuss where we are up to and where we go from here. I spoke earestly in a email to him. There is a minimum of 2 years until the research for the surgery that may help me will be availble. Right now, with both ends of my trachea collapsing inwards, it would be a miracle at this rate if I make it to the 1 year mark, never mind the 2 year. I am getting tired, tired of surgery, tired of pain, tired of being tired. I think perhaps its time to review where we go now.

Half the time these days, the thought of leaving the house, makes me want to cry at the effort it takes. I have more bad nights than I do good nights. And today, virtually every breath I have taken has made a squeaking sound. A squeaking sound, like a squeaking toy, is from the air trying to get through a small gap. My lungs take twice as much effort to pull that breath in and out. It is exhausting.

And I know the lungs cant hurt as they have no nerve in them, but I am getting a heck of a lot of pain along the scar site from my lung surgery. To the point, where today, I even asked mum to give me some physio on that side to help it.

I have a feeling that this appointment, is probably going to be one of the hardest appointments I have had to face.

In other news, well not really other as its on the same tracks, but the world leading surgeon for tracheal transplants, the one who is supposed to have been making leaps and bounds and fixing my type of issues, was arrested last week for fraud. So yup, thats going to suck. Though, it does now mean, that I am definitely under the worlds leading surgeon for tracheal surgery.

I am doing everything right, I am in the best place and I have the best people caring for me. Other than that, lets just play on luck.

I have my niece here tonight, so some quality time and cuddles might be a good option.

gotta give

Something has to give, something has to change. And it has to change soon.

My last post made little sense. And this post is even harder.

Everyday my breathing seems to be getting tighter. Where at one point, I used to feel breathless, now, I feel the trapped, I feel it trying to get out, i feel it stuck. My body crying, screaming for oxygen, my lungs pumping it and my throat unable to keep up. The pressure builds, the effort increases, things go fuzzy.

I know I complain lots about sleeping too much, but this is beyond anything I have had before. I can barley keep my eyes open. Long sleep, unable to wake. Inability to read anything as my eyes keep going crossed trying to stay open. Right now, I type with my eyes shut, jerking awake suddenly every sentence or so.

But sleep is not as easy as it seems either. Everytime I sleep, I drift off, begin to relax, begin to rest, before suddenly being ripped back into reality my lungs once again complaining, forcing the air through the smallest of gaps. Shift my tube, make the gap slightly bigger and I can sleep again. Sleep until the next time. Hourly on average. Right through the nights.

When moving my tube brings me to tears, then I no know it is time to top up the painkillers. I hate them too. Yes they make you more sleepy, but the pain is extrodanariy. Like somebody has a knife to my throat. The slightest movement.

A world of painkillers and sleep. But its not enough, its not comforting. What if's play through my mind.

So many symptoms. Shake head rapidly to force eyes to focus. Everything a struggle. Conversation, impossible, movement exhausting. I walked 15 steps earlier, from kitchen to living room. Over 5 minutes to get my breathe back and another 20 mins to get the energy. Cant be bothered with food, to much effort.

Sleep calls once again, only had 19 hours to day.

I need help. I know I need help. Beyond anything I have done before. Is this what dying feels like? Is this what the end will eventually be like? Pity from people. Doctors, giving you everything you ask for. Parents making you sit still. Looks of concern. Skin so pale.

I need that help and I need it soon. I need it tomorrow, not later. But off who.
Main surgeon says nothing he can do, says speak to home team. Home team say, nothing they can do, speak to main surgeon. Like a child, go ask your mum, go ask your dad. I dont have the energy to play, I dont have the ability to be elquont. I have reached out, I have asked for help. I have hanfef control over.

Time to drift off into nothingness. Tomorrow will see a change one way other. Tomorrow help will come.
I hope it does anyway, this is getting beyond my ability to handle small quantaties of fear.

Tomorrow or bust!
Something has to give.
Giving into inability to see.
Cant make out letters.
So good night.
And thank you.
some rest please now.

Fool the world.

Yesterday was not a good day.
My mum came to wake about 7am. I had been coughing constantly for the past 2 hours, but the longer she listened to my coughing, the more I sounded like I was chocking. When she came in, I was in that place between awake and asleep, I had been for a while though the times are hazy.

I knew I needed to wake up, sit up and sort my throat out, yet my body was crying for rest and so I could not bring myself to an awake enough point to do what I needed to. I was grateful that Mum has come in.

From then, I spent one of the scariest hours of recent times sorting myself. My tube airway was partially blocked. Every cough was agony and then it becomes a vicious circle. The airway blockage restricts the air you can take in, which restricts the pressure you can breathe out, making it harder to cough any blockage away. Lots of saline, lots of nebs, tons of coughing and a fair bit of suctioning and I was able to eventually clear it. Though, the block must have been below the level of narrowing in my airway because, as I began to move it, a few times, I found myself practically unable to breathe. I was just about to get Mum to come back in and sit with me while I carried on as a backup, when something shifted and I could suddenly breathe again.

The effort of waking up like that, not only exhausted me, but left my pain way up above where it had been.

I promised to help mum with shopping, which I did and then came home for a nap.

Waking from the nap, I realised I had slept through my 4 hour marker for topping up my pain meds and so, I was literally in tears. It has been a long time since I have felt that low. I felt so frustrated by the whole thing. I am used to my breathing restricting me, but to have pain put an even bigger restriction in place, was just too much. So I contacted my surgeon, who is going to review me this week, instead of the week after, I am so thankful for all he does for me.

After a good nights sleep, this morning I felt a million times better.

It was a family wedding today. It was nice to take the time out to glam myself up a little. This is why I love being a girl. A little make up, a pretty dress, I can feel on top of the world. I can fool the world. A pink glow to the cheeks, bright eyes, I almost look awake, I almost look my age, instead of the 60 year old I feel like inside.

 Please excusse the mess that is my room. I had to make a card at short notice and I can make when its clean hehe.

I am a kid at heart. I like twirly dresses with sticky out skirts. (Though i need to invest in a petticoat to make it stick out more.)

At this point, I know I am going to have good days and I am going to have bad days. I wont berate myself for the bad days. Instead, I will rest, let my body settle and recharge. The good days, I will make the most of. I cherish everyone of them and actually have large amounts of energy and stamina on the good days. Things will balance. Everything will even out.

Tomorrow needs to be a rest, but also catch up on house work kind of day.

silly trachea

A plan, of sorts is now in place. Though getting to this stage was not the most comfortable thing in the world.

I saw one of the surgeons this morning. The tube they put in last week, was not holding in my throat, my throat was literally pushing it out. as they dont want to lose the opening in my neck, it was decided that I would need to switch back to my usual trach, a simple enough job, one tube out one tube in, they are both the same sort of size.

And that is where the problems set in. 

what should be a simple switch, did work out that way.

They took one tube out, but nothing would go back in. 

They pushed and pushed, but where my trachea is like bone, it would no give.

It was a horrible 45 minutes of struggling. Needles, blood, coughing, retching so hard and trying not to so hard that tears were streaming down my face.

Drenched with sweat, blood, tears, overall not a pretty sight.

Give the doctor his due, he kept his cool, but you could see him running out of ideas.

I have a high pain threshold anyway, but this was really pushing me to the edge, as my head began to throb the effort.

In the end, he managed to stitch a temporary tube in place and I am now on the emergency theatre list. As soon as space becomes available I will be going back to theatre. 

There going to try to put the trach back in, but they dont know what it will take to do such thing. My trachea just dosnt play fair. But then knowing  the way my trachea likes to mess about, they will probably fix it within seconds when i get to theatre, as my throat likes to play the role of an attention whore.

Oh, did I ever mention that I am now the proud owner of a pair of sock monkey pj bottoms? I got them while I was away, but I do love them lots.

There is not a cloud in the sky outside. Could this be the start of summer? 

Some sun would be good.

Though shame it comes on a day where I have to wait inside. 

33% and Grade 4 stenosis

Bright and early this morning my surgeon called me down to clinic, so he could have a look and see how things are healing. He seems to like to do this recently, as he has the scope equipment ready there so easily glance down. Place was so busy and squishy I thought I would end up waiting ages, but it wasnt to bad.

I saw him yesterday when he was walking past and I laughed at his theatre hat as it was bright green kids jungle theme. Today he sought revenge and laughed at my 'brightness.' Well, I was limited on stuff I could bring down, so, I was wearing my PJs,which are mostly bright and I needed a zip up jumper which the only one i had was pink plus my red hair. I just laughed, least I cant be missed.

Icky spray of lidocaine and down (or should that be up then down) with the camera ouchie. He my numb it, but there is still one bit that hurts like hell.

Said it looked good so far and has healed well. Then went on to say, but then we know your a good healer, now the chore is to get you to stop healing ha. So he wants to take me to theatre again next Tuesday and possibly take out the T tube YAY!!! Though he said I have to be nice to the other ENT surgeon as my surgeon wants to steal some of his theatre time mwhahaa. I think this will be ok, as the other surgeon seems nice enough and comes for a natter twice a day most of the time.

It also gave me a chance, with a voice to ask a few questions. I asked, how wide my airway was when he took me down last time. I know I was struggling, and so I was pretty interested to know where I was up to. Apparently I was at about 4mm. It should be about 12mm, so I had about 33% of the breathing capacity of what I should have. Now to go from 100% to 33% in 8 weeks, is a pretty big step. Now I know why my body and head where complaining of lack of oxygen.

I guess that is the lowest I have been outside of hospital. The only time I have had lower than that, was when my stent kept blocking and I had to sit in ICU as I kept going from about 40% to 10% in a matter of minutes. anything below 15% is unmaintable really. So basically, 15% does not allow enough gas exchange to keep you alive. So 33%, yeah, scary really, grade 4 stenosis.

Fingers crossed that is all behind me now!!

I also made a plea to my surgeon whilst I was there. I literally begged him, to never ever make me have a T tube permanently. He said he knows they are not very nice. When I said I was literally spending about 5 hours a day doing just nebulizers, just to keep it clear enough to breathe easily, he said yeah,but your tube is a bit unique and glued in in many different places using bits of skin to hold it everywhere.  Yeah, nice picture that drums up ha. But least he knows my hatred.


In other news, Bree has now passed fully. I said my good byes as best I could last week. She was declared brain dead and the life support machines switched off. At that point, well more so before then, I said my goodbyes type of thing. I knew that it was just a wait then, for her body to rest itself, but she was no longer Bree at that point. He soul, spirit and humor had already gone. Else, she would have had some way of making a lame joke along the lines of what you all moaning about, shape up. Rest easy hunny.


Oh also, I keep trying to comment on peoples blogs, but blogger is being silly and saying something like select profile first. Any ideas on how to fix this? Thank you

Is it a sign?

So, I was feeling pretty fed up the other day, but whilst a friend was here she looked out the window and exclaimed, 'Oh look, its a rainbow'

Its not very clear, but you can just see it coming down next to the London Eye.
Though, it was pretty dim and vanished within a few minutes.

Today, my mum has come to visit. Once she left, I glanced out the window and saw this.

Much bighter and bigger. But, it was almost a double rainbow, which you can see so much on the picture. There was the begining of a second rainbow underneath it. And of course, looking at a double rainbow I hear that guy from the viral video.



Which, even more so lead me to thinking of Pocket God (And yes, I still crack up everytime I play that game!) Pocket god, is on the iphone and is one of the first games I got years back. Its kinda like a sim game, but you get points for killing the people in certain/funny ways via a series of mini games. But they update it every month or so to keep up with trends. Really should get it if you havnt already.



Anyway, I went to effort of uploading the rainbow pics off my phone, so thought I would stick a load up at the same time. Come with me for a journey into the past week or so ha.

So, the night before surgery, I knew I wouldnt be able to eat again for a while, so i said i wanted something tasty and filling. I went to ZiZis yum. And ordered a Calzone.

Yeah, that thing was huge. And filled with tons of meat. Ermm meatballs, Bolognese, pepperoni, mozzarella, ham and tomato. It was a struggle but it did fill me for like a week ha.

So, the day I went in, the surgeons were busy and wanted me left till last, so I didnt go down till about 5pm. Want to know how I kept busy?

Cant beat a Disney colouring book. And yes, I do love Pro Markers, just wish they were not so expensive so I could get more colours. Black is the next one on my list.

And a friend called in for a natter while I was sitting around. She laughed at the netties the nurse gave me to wear for theatre. (Those who dont know what netties are, they are like disposable knickers made of net) I of course looked at them in discrace, like I usually do and declared that I wasnt going to wear them. So instead she decided she was.

I think they kinda suit her. Though, I think when she heard that super heros wear their underwear on the outside, she might have taken it a bit wrongly.

When I came around after theatre, I wanted to try and leave myself some messages ha, I wanted to jot down things such as what hurt the most and such so I could prepare for next time. Well as you can imagine, me + 10mg of Morphine + a touch screen= jumbled up letters that mean nothing haha. I realized they didnt mean much so instead, I took a couple of photos, hoping to kinda convey things. blah

I remember trying to take it, but I couldnt get my eye lids to go up high enough to see my eyes haha. Its strange though, as the colours seem right on it, but my hair looks so faded and washed out, yet it isnt anymore, its bright and its bold still (though i have roots)

This one was the same thing the next day

Its odd thinking back. Everything was so clear. Yet now, I only vaguely recall the first 3 days.

Yeah, I liked playing with my camera anyway.

Oh look, its dinner time. yum

I do have some more exciting menu pics, but I will post them up at a later date.

And the things you do when your bored. (though the nurses keep taking my pile of medi pots and putting themin the bin :( which is mean) Though maybe for the best, as I was wearing them as glasses last week on web cam to my dad.

Yeah, while I had no voice, my dad wanted to keep in touch, but his typing method is still find and peck, which is so painfully slow. So instead, we set up web cams and he was able to talk and i could type my reply. :)

Anyway, nuh night

One foot in front of the other.

Last night, I lost my temper on the ward, though it was more out of frustration than anger. When I get frustrated it wind me up and I find it hard to express my frustration at the best of times, but when lacking a voice its even harder. I feel like I am looking at people sometimes, praying with my eyes to them, to please understand what I am saying.

For the past 3 days, I had been asking the nurses nicely if they could clean and dress my neck dressing as it was hurting more than it should be at this stage and I was pretty sure it was infected. I had had my painkillers changed from ora morph to oxycontin but by the time i went to bed, even they were not cutting through the pain to allow me to get comfortable enough to sleep. I couldnt do my own neck dressing, as again it was to sore to lift my head high enough.

So at midnight, they came to put my night fed up. I dont need the night fed, I am eating and enough, but the rules are that it has to stay in use until a dietician says it can come out. So when they came to set it up, 3 hours after they were meant to, I told them were to stick it. I was kinda already tucked up in bed trying to get comfy, failing and instead crying. I said, I would rather the 10 mins setting up an 10 mins taking down, be used on something more important such as dressings as infection could compromise my surgery and get me sick real quick, where as the fed was just stupid.

She came back at 1:30am and offered to clean my neck.Oh how I could have screamed.But she did do a quick job on it and as a result, I managed to get some sleep.

It was handed over this morning that it NEEDED redoing. Felt like saying ner!
Anyway, docs came in, also said it looked abit 'mucky' but they were not sure of the plan till they spoke to the boss, but promised to have news by dinner time (yay)

Next thing, one of the nurses came in with my file and asked me to go down to clinic as the boss was doing out patients there and would see me.

The walk, although only a few paces, was hard work. I arrived literally gasping. Sat in the waiting room and then had to laugh, when a clinic full of people are sitting there waiting and the boss just comes out and calls me by my first name and strikes up convo with me heading into the clinic room.

He asked about the feed tube, I rolled my eyes and explained as I best i could. He asked if I wanted it out, then handed me a bowl and said, you want it out, take it out. I thought he was joking for a second but he sat there grining, as I removed my own ng. Its an easy task and i knew that, but I guess I just assumed someone would have to do it or have it cleared with them.

the next thing was the tube. He covered the trach and asked if i could breathe. I couldnt. Do he looked a little confussed, then said sod it, lets take it out anyway. There is a T tube underneath that should allow me to breathe. So he got a spare trach ready to shove in just incase, took the sutures out and took the trach out. It was a very nerve-wracking minute or so. He standing over me, with baited breath to see if I can breathe or he needs to act quick. I kinda took two slow breaths testing t at first then smiled at him and said yes, to which he grined back.

Cleaned the tube out and such, then had a look down with the camera.  Theoretically, I should be able to talk and direct breath through my mouth and nose. But, when he looked, there was too much swelling for me to use my upper airway.

The same below the tube, but more so, the arm of the T tube, would not stay outside my neck as it had gone to short. That was the next problem. He stood talking to me, with a clamp and other fun tools in my neck, holding on to this tube so it didnt vanish and get stuck or cut off my airway, whilst he issued out instructions everywhere of things he needed. He then got another surgeon to keep an eye on me as he wanted to find something. The other surgeon look petrified and warned me to behave and not go down haha.

Anyway, in the end, he put a ET tube (the more flexiable tubes used for intubating by mouth)inside the T tube and stitched  one to the other, bear in mind, this was all being done in my neck whilst I sat as still as I could. So yeah, a system was put into place to hold things together and he will review in a couple of days.

Do I think it will work? No. Well I guess it will, but it needs a little more tweaking and playing with.

I awoke from my nap, to find the end of the tube in my bed eek. So, with a little DIY work, I have used a set of trach ties and madea kinda holder for the tube, so I am hoping that it will hold it a little better. And the surgeons can review in the morning and decide if its safe enough.

But, coming out of the room with just the T tube in, was truly wonderful.
I was able to take a slow deep breath right down to the depths of my lungs, without gasping to get the breathe out quicker as I need my next breathe. It was wonderful and I found that I felt very dizzy for the first short while, due to my oxygen levels suddenly jumping. Wonderful wonderful feeling. I realize now, why things felt so wonderful last time I had this big op, as I would have had the same feeling when I got my trach out last time. And why it was so scary when it suddenly began to get bad again. But fingers crossed that this time it will work.


In other news, I have had some sad sad news about Bree. I dont know if anyone knows bree on this blog, but if you do, my thoughts are with you all. I will write more tomorrow.

More clinics

This morning was clinic with my thoracic surgeon up here. It went well, and for once, I didnt have to do the strip for an xray as I only had one last week.

His role at present is more just keeping track of me, incase of any emergencies when I am home. I trust him more than the ENT surgeons up here and much prefer his hospital. Not to mention that I have been under him for 6+ years now and he has my whole history of respiratory arrests and such.

He laughed to begin with, said it truly is amazing to hear my voice now, that I worried him in that area for a while. I told him about the ENT guy suggesting we try another stent, he didnt want to say much, but said that it would need to be a wide stent to cope with my excessive healing. He also asked if I still wanted to be under him for throat stuff, to which I of course said yes. He then said, in that case, if they put a stent in, can I ask them to update him frequently. Just incase of emergencies as he dosnt want to step on any toes so to speak.

We then spoke about what the respiratory doctor had said in regards to the bronchectsis. Asked a couple of questions about what I was coughing up and I told him about the constant infections, he already knew most about the infections as he has treated half of them. He glanced through my old scans and then said that, yes, he thinks it would be a good idea to investigate it further. He smiled and said, we didnt get much chance to investigate other causes last time did we. Ha Did I mention how much I love my surgeon. Seriously, hes a great guy and goes way out of his way for patients, coming in on days off and phoning through the night to check up on them.

He then said that he would refer me to a good lung doctor that he knows in his hospital as he trusts this doctor and they always do a good work up with patients. So this is a step in the right direction and I now have it sorted before I go back to London. I also went and got my bloods done, for repeat levels after the whole antibiotic mix up thingy.

I still doubt myself though. Cant help but think, is my breathing improving? I said to mum earlier that I thought perhaps it was, to which she replied, it dosnt sound it. Which leads me back to doubting, is it improving or am I just learning to deal with it. Time will tell I guess.

In other news my hair is really bugging me. Its at that akward length where it looks scraggy. Plus it needs redying. I would prefare to strip some colour out and then dye it as at present I have more roots than an oak tree, but, I appear to be losing a fair bit of hair at present and so people keep telling me to stop dying it. Might just stick some more purple and blue on it and hope it covers it up for now. Not sure why it is falling out, perhaps to do with my tacrolimus levels? blah we shall see.  I keep thinking of changing the colour, but I really like the current combo and I get tons of compliments on it. On average I get about 2 people a day stopping me to comment haha. But then I see someone with red and I think ooo I want it back!! I loved my super bright red. Oh I dont know haha.

Preparing for the worst, and getting something not prepared for

I have been staring at this page for a while now, wondering what to write. Truth is, I am exhausted in all ways that I think I can be exhausted. All the while, still being amazed at the highs and lows in life and how they can all be thrown together to make a big jumble. I prepared myself for the worst, or what I thought would be the worst. And now? I am left with a big jumbled mess that I have no idea where to go to next. I shall explain.

I was due in hospital in London on Monday for the usual laser and dilation, but with the big boss surgeon as the previous surgeon had had some concerns about my airway. Mum was going to come with me so we booked a hotel for the night before as I have to be in the hospital for 7:30. As it turned out, my dad was off work this week so he decided to tag along. So I decided to go a day earlier and meet my friend so I could give her her christmas presents and generally have a catch up.

So I went on Saturday afternoon and after some trouble with traffic and missing my train, I eventually met up with her and did some quick shopping. Then we went out for yummy tea and back to hers for a natter and some wine.

It was good to have a proper conversation. To be social so to speak. In a way its become to easy to just kinda isolate myself, or take bad moods out on others. So we had a drink and ended up going to bed at like 3am.

I had to meet my parents at the station at 12:30 the next day, so I didnt sleep to well, mostly waking a lot thinking that I had overslept. Met them and took them to Camden Market as they had never been and I thought it would be an experience for them. I love Camden, its one of my favorite places in the UK. Mum liked the whole shopping expiernce and seemed to like some of the items there. Pretty much picked up a Pashmina to go with every outfit as she feel in love with the one I got in December. Dad said it was a very weird place, but he seemed to like it, especially the free food samples they all hand out ha.

By Sunday night, I was pretty beat, but we decided to go out for tea, which was fine by me as I knew I wouldnt be eating much the next day. We went to O'neils, and it was yummy, that was in Islington angel. Though, we ended up on the wrong bus home, got lost and had a 20 minute walk back to the hotel.

The hotel itself, is not the nicest of places. Everytime you moved in bed, the springs clunked and the room was pretty cold all night. Had to be up at 6:30 and walked to the hospital. The registrar came and did my consent form and the anestists took all my details. I saw my actual surgeon (big boss guy) for about a minute before I went in and he commented on my stridor (noisey breathing) and made me sit down right away. He seemed pretty concerned at me walking around making so much noise. The anestists had some visiting students in so was explaing a few things to them, which I enjoyed anyway as I am nosey. Basically saying that they would normally do a gas induction, but given my lack of ability to breathe or clear gasses out of my system, that it would have to be done with chemicals until the blockage was clear.

So I was off to sleep no problems, apart from them having to keep me at a 20% angle instead of flat as I could not breathe at all when I went very flat. Now normally, these scopes, I am back on the ward within an hour, this one, I was really groggy coming around from and I didnt get back on the ward till about 2:30 hours. I kinda fitfully napped for a while. Its strange as last year when all this was going on, I used to come around in the recovery room and be having full conversations with the staff, yet now, it seems to take me hours to come around.

Whenever I came around on the ward, I kept asking for painkillers as my throat was so so sore. She kept saying I will get you some written up now. I also asked several times to go the loo, in the end, I got fed up asking, I clamped my own drip off, got changed under the covers into my PJs and was just about to waddle off down the ward when my parents came in. Mum exclaimed that I looked crap and should sit down, but I went the loo anyway.

I spoke to mum and dad a little bit, told them I didnt have much info, but I remember my surgeon, saying he would come talk to me properly when I was awake more. By this point, I was allowed to drink and again asked for painkillers, to which I was told, we are waiting for them to be written up.

Mum and Dad decided to stay with me incase the surgeon came, as I am rubbish at remember things at the best of times, never mind post surgery. About 2pm one of the registrars came up to talk to me. He told me everything had gone fine and there was nothing to worry about. He mentioned that there was still tissue there that shouldnt be, but it will eventually settle. I asked if I would get to see my surgeon, and he said he wasnt sure as the surgeon was really busy.

I was at last bought some painkillers after asking the doc for some, only 5 hours after asking. Managed some food and dozed for a little bit. I dont know what it was, weather it was a flashback or something, but the ward was so very very hot, the sweat was dripping off me. I remember waking, being in pain and dripping wet. Mum and dad sitting next to my bed watching me. I couldnt really piece it together, just kinda kept drifting in and out of sleep for what seemed like hours, but was only a short time in reality. 

A nurse, when she gave me my painkillers, had finally detached my drip, that had been hanging empty for hours, but just dropped the tubing on the floor. It was annoying me, so I tied it up where it was meant to go, waiting for her to come back and dispose of it.

She then came back to tell me that I was written up for some IV antibioitcs so I would be staying in for a couple of days. A while later, she came back with my IV meds and starts putting it through, it hurt and burnt like hell. I have had a lot of IVs in the past some of which I have reacted to, but none of them have ever been this painful. I told her it was burning, she just said, yeah, its a strong med, Mum even looked concerned. I was squeezing a pillow as tight as I could trying not to scream out, trying to tell her that it was hurting far to much, I did in the end burst out crying and literally screaming, while all the other patients sat and stared at me. My arm turned bright red, she still didnt stop, just pushed it through quicker.

My wrist started to blister, so the nurse decided to rub it vigorously to get the blood flowing. Now even I know, you dont rub blisters, especially in hands that are not even wearing gloves, so I asked her to stop, then told her to stop, then put my hand over the area so she couldnt, seeing as she wasnt listening. She then sent for a bag of saline to flush it through my veins. As she gets the bag, she gets hold of the wire, that she left on the floor earlier and goes to connect it though an IV. Now bear in mind, that even if this wire had not been on the floor, it would have been uncapped for hours in a hospital environment. I told her to stop again. She said its fine, I said its not and covered my wrist until a clean set was set up.

This was my wrist about an hour after she finished messing. The blisters have mostly gone, but you can still see a big one under the tape where it goes white in the middle of the red.

Well eventually, my Surgeon came on the ward and came over to talk to me. At first he seemed to be saying the same thing, everything looked ok, just the scar tissue, so I asked him straight out, will the scar tissue ever stop forming, I mean we are at nearly 6 months post op now and things dont feel like they are getting any better. He said, that there are no predicted out comes, that it was the first time my op had been carried out. I had two type of reconstruction. The big one, where they take your rib cartilage and open part of your trachea, and another one, where they cut out a big chunk of trachea and stitched the 2 ends left together. As the two ends have been stretched, some narrowing is normal, and the two different sites will take a while to heal. That being said, he would have expected them to have healed by now, and yet my trachea was still not healed. He hopes that my body is just being slow with it having all the other things going on with it.

He then asked me what life was like in between the surgeries, did I find they helped. I explained that the 2 days following are hard work as there is swelling and crap on my chest plus the post anesthetic thing, but after that, things kinda settled back to the way they were before the op, but gradually getting worse the more I tried to do, when I have to increase my nebulizers and rest more, but that dosnt seem to help much either.

He then gave me that look. That look that says, I dont want to tell you this but I think I have to. He said that he thinks now, that my breathing problem is in relation to the vocal cords, that they are stiff and not letting air through the way they should. I asked the dreaded question of where do we go from here. He said, we can try taking a chunk out of the vocal cords and see if you can breathe. I said, if you are taking some out of the vocal cords, will I lose my voice. He said it is a possibility, I may just lose some of my voice, or it may just break at even lower tones than it already does.

He said he would discusse it more with me next time he sees me, he then asked the registrar to book me back in, the reg said I have booked her in for 2 months, and he said oh no, thats far too long, make it a month, but Kim, if you are struggling, get in touch and we will fit you in sooner, we can get you in same day if needed.

I was holding things in at that point, dreading looking at mums face to know all this. I asked him when I could go home, and he said in a couple of days, I looked pleadingly at him and asked if it could be made sooner, he said, ok I will compromise, you can go tomorrow morning. I then asked if it would be possible to go that night. I said it would be safer. If I went the next day, I would have to travel alone, but if I went that night, my dad was off work and could keep an eye on me and such and I do live right opposite a hospital. He said that he wanted me on IV meds, and I showed him my wrist and reaction to the meds, so he said I could switch to oral meds and agreed to let me go.

So that is what this whole thing is going to come down to. What is more important? being able to talk? or being able to move and breathe at the same time? But I am gready and want both. And the pioneering surgery I thought might one day help, the prospect of a tracheal transplant, that is out of the question again now. The transplant does not involve the vocal cords and so I would not be eligble now that it is glottic as well as sub glottic stenosis. 

I tried talking a little to my parents later on, but they said they didnt hear much, so I explained bits and I have explained a bit more today. Mum looks at me with that look of sorrow. I can read it in her face. My mind reels back to suicide, if I had succeed last time, I wouldnt be going through this now and I wouldnt have put my parents through everything. I know that mum in the past has worried that they made the wrong descion saying yes to transplant and I think now she feels it even more. That perhaps, sometimes you can be beyond saving. I hate that she has this guilt, but on the same account, I dream of the peace that the end brings. I dont know how much longer I can continue to fight this. To make life changing descsions. 

Just exhaustion

To my parents as well, I can see them age virtually daily.

And they have so much more to come.

Leeds 7 Caffeine

Tomorrow, I will ache and tonight I will sleep well.

Today, was my 6 monthly Liver Transplant check up in my transplant centre. Two hospitals monitor my liver, a hospital close to home, so that emergencies can be dealt with and basic monitoring and tests done and St James hospital in Leeds, which is my transplant centre. I was given the option not long after my transplant, of having all of my care transfered to my local hospital, but after many bad dealings with my local, including, missed or wrong medication and unhelpful teams that miss obvious things, I chose to stick with the transplant centre too. Basically, I trust them more and they have more of my surgical history up there. Not to mention, the main transplant surgeon is lovely and often comes to speak to me if I am on the ward up there or if I need any extra surgery such as Hernia repairs. So I am seen in the transplant centre every 6 months and my home hospital every 6 months inbetween, basically meaning I get checked every 3 months.

So this morning, it was an early start (for me anyway) and I had to be up for 8am!! For the drive to Leeds. Sue came with me and we had a laugh, singing to music and drinking energy drinks. Of course got stuck in all the peak hour traffic on the motorway, plus roadworks, so it took about 1.45 hours to get there, no a good day I can make it in 1.15. Clinic was busier than I have ever seen it, in a way this has to be a good sign right? But then, I am sure there is often 4 doctors on, but today only 2. So we were at the hospital for about 3 hours, by the time you do the whole weight, blood pressure, bloods, patient affairs thingy. Everything seems fine and the docs are happy enough with me.

So by the time we came out, it was past lunch time and I was hungry. So we had a quick wander around leeds, got some more energy drinks for the drive back and some chips for dinner and headed back, in the heavy rain. Driving across the Yorkshire Dales, is often chore, as it is one (if not the) highest motorways in Britain, so it usually windy, plus a lot of hills. The weather is often miserable and we have been known to get stuck in thick snow coming across it. This is one of the reasons we have clinic every 6 months landing in November and May, to avoid the worst of the weather.

So I got home and where I would usually be so exhausted from driving and being out that I would need to rest, instead, the caffine I had been drinking all day kicked in and I felt the need to do something with it. My room has been annoying me for days so I began to sort shelves out.

You see, I have this new addiction, I seem to have really gotten hooked into doing craft type things. Again, this was one of the things I used to enjoy doing before the whole depression thing kicked in. Well it seems to have come back again and I find myself either buying craft stuff, or searching my room for stuff. My craft box, consisted of an old shoe/boot box, so every time I wanted to get something, I would have to pull loads of stuff out, or else other items are spread around my room. So today, while out, I bought 2 new plastic storage containers.

I have just sorted 3 bin bags of rubbish and 4 bin bags of clothes and shows I dont want out of my room. My clothes are now folded on the shelf in coordinating piles instead of dumped on the floor or chair and more importantly, my craft stuff is all in a a nice big box (well its in 2 boxes, but once christmas hits, it should go back to one)

It still has a long way to go, but it is a million times better than it was. It is now 1 am and I have been on the go really since 8am. The caffeine has worn off now and I am ready to sleep. Cant wait to see my room finished and looking good for a change :)

I came here with something specific to write and now my head is empty. That is useful.

It has been a fun couple of days. I had my nephew staying since Sunday so we have mainly been playing wii, which is fine by me as I get to be lazy and not have to move much. We have been playing lego Harry Potter, which is a really fun game. Its kind of a two player co op style game, in that you have to work together to complete mission on it. Although I did find it more fun, just squashing him with random cars or shooting spells at him. There was even thins kinda chair, where the legs walked on it, that was pretty fun to chase him around on.

I like spending time with Adam, he is a teenage boy, yet he is growing into such a nice person. He is always checking on me to make sure I am ok and likes nothing more than to make me laugh. Some of the humor he comes out with does make you smile. He at one point was telling me how proud he is of how strong I am. How I just carry on and dont get sad even when things go crap. ha if only he knew. But it was nice of him to say.

I am slowly recovering from that random bout of illness. I pretty much feel back to my normal now, though I could still sleep for England. My only problem now is that I have developed a rattely cough. So much so that, I sound like a 90 year old smoker. Fed up of mum telling me that I sound like I have a lot on my chest. Feel like saying to her, yes I have, now what do you want me to do about it?

Saw my surgeon on Monday, its the first time since I have been going to London that I have seen him. He is really pleased to see me without the Trach, though he has not been sent any info about what they have done. He did however say that he is still happy to deal with me if I run into complications and such. That on its own takes a weight off my mind. I was always scared of running into problems here and him saying your not under my care now, you need to go through A&E. They really could mess things up, where as at least he knows the story and more or less what to do with my airway.

He also said that he thinks that I made the right descion and that he is pleased for me that they got the trach out. He didnt think they would be able to.

And that is my exciting week.

Normal

I have had an amazing weekend.
Nope, I didnt do anything huge, life changing or even that exciting. What I did was, be almost normal. I had a day that someone my age might have, I did things that I used to do. I paid for it afterwards, but I had the fond memories to go on with.

Thursday I picked my niece up. I wanted to steal my sisters photos, and I managed to do all that without her noticing me. Which is pretty good as not long ago, I could have coughed and panted to much to do anything in secrecy or even to have the energy to do it.

Friday, I scanned a lot of the photos and got them printed. I also did some shopping and had a movie night with Alison and my niece. Saturday I got up early. And it was early, it was like 7:30am!! And I took Alison to her Ice skating lesson. My niece and I both got on the Ice afterwards. I didnt do much last time I went skating as I just didnt have the puff to do it. I had to stop every half a lap to get my breath back. This time, I could get round at least 2 laps before needing to stop. I didnt do to much as my blades need sharpening and the rink was crowded, but I was pleased with what I did do.

I had a wander around the shops and took Alison home. Had a bit of an argument at home, which wasnt fun but oh well. Took my niece home and came home myself. Sunday the spoon theory really did come into play. Mum commented that I was breathing heavy again and I just felt so drained the entire day that I hardly moved.

Today, I still feel so drained, but I woke early for me this morning. I found myself sitting bolt upright at 10:30am gasping for breath. I ran some nebs and rested, but sat more upright. I checked my peak flows and they had suddenly dropped to 140. I was thinking oh no, not already. But after some nebs and moving about today, I seem to be breathing a little better. So I have everything crossed that I had either drained myself too much on Saturday or that I had slept with my mouth open and dried my throat out.

Remember a while ago, my surgeon here had applied for funding for me to get a humidifier to help ease the issues I was having with my trach? Well, I got response from the funding place on Friday. It only took 4 months!! Anyway, they have granted me the funding. I didnt know what to do at this point, as I dont have the trach anymore so I didnt know if I was still eligible. Then came the issue of, would it help now? and if it didnt, would that not be a waste of money if I still got it. I put it on my list of things to get sorted when I get a chance.

Today, the respiratory nurse phoned. She had the letter confirming the funding and wanted to clarify a few things. She said she had discussed it with my surgeon, who knows I dont have the trach, but given my current issues, the surgeon still thinks that I should get this equipment. That it might help with the issues I am now having. For example, if I ran it through the night, I shouldnt wake up needing to urgently neb all the time. His original hopes were that, if I had this equipment and slept with it on, it might help my breathing so much that I wouldnt need to neb during the day at all, and so I could get on with things easier. So apparently the medical engineers at the hospital are currently in discussion and meetings with the company that supplies them to discuss which one will be the best for me and how to get it and such. Its strange how much work goes into getting one piece of equipment.

I have the solicitors tomorrow, which I am dreading. Getting through that, especially without crying, will be a challenge. I did however, have to calculate all my hospital associated stuff. In the last 13 months, I have had 72 separate appointments, spent 142 days as an inpatient in hospital and been to theatre 16 times. No wonder this year seems to have vanished with nothing to show for it.

But, through all that, I am inspired. Greatly so. I stumbled across the blog of a lady who is currently on the heart transplant list due to cardiomyopathy (Which is generally when the muscles of the heart become weak) She had an internal defibrillator planted in her chest, which went off during her speech on her wedding night. Since then she has detoriated and now has, what is effectively an artificial heart, while she waits for transplant. She has to carry part this around, in a backpack style bag. Yesterday, she posted about what she has been up to. Andrea has been going to the GYM and participating in Yoga and pole dancing classes. WOW. I mean just wow. I cant even bring myself to go the gym with a working heart, never mind carrying equipment and whilst on the transplant list. Kudos to her!! I really hope she gets her call and soon. Her blog is here if you wish to read http://stayingtruetomyheart.blogspot.com/ )

Humbeling

Apart from a foul taste in my mouth, things seem to have gone well.

I awoke this morning, or would that be awoken?! early. So by 7am, I was showered, bed changed and all set for surgery. Though, I felt like a complete fraud! I checked my peak flows and they had shot up to 240. That is like what they were virtually when I was discharged 2 weeks ago. I explained all this to the surgeon and he said, well that is a good sign as it shows the steroids are working.

Anyway, I ended up getting the very first theatre slot so by 8:40, an anesthetist came to take me up, not even a porter lol. It was a bit hectic as you didnt have to do the usual wait around for a nurse and handover upstairs, it was just get into bed lets go. So got up there and they tried to flush my IV line, I had had my morning meds through it, but it had been painful and difficult, by the time I was upstairs, nothing would go through, so out came that line and with a lot of poking and prodding, they got a new line in, which is much more comfortable.

For some reason there were 4 anestists in the room with me. I think 2 were supposed to be there as scheduled in, then another random person showed up and starts asking me lots of questions and then last minute the big surgeons, anestist came in as well. spoilt eh.

So it felt odd going off without my trach, I had forgotten how annoying their stupid oxygen mask is that crushes your eyes lol, but I was out for the coutn pretty quick so all good. Came around in recovery and imediatly thought something had gone wrong. I looked at the clock on the wall and it showed 12, now if I was in theatre by 9, that would be a long scope. I was also wrapped in a huggy blanket. Which is a big blow up blanket filled with hot air. After about 20 mins I realized the clock was still on 12 so I had my times wrong and the blanket was just because I had done my usual of getting very cold during theatre.

So I came back to the ward and slept through dinner and most the afternoon. Strolled to the loo a couple of times, but things were difficult and I was struggling for breathe. This has luckily eased through the day and so it must have been post op swelling. Spoke to the surgeon later on and he seemed happy with the way things are going. Going to give me one last dose of steroids tomorrow morning and then see if my airway holds its own from then on. Plan is, to aim for discharge on Monday and come back in for another check up in a couple of weeks.

So overall looking good.

I ordered a book the other day, which I have been reading (and almost finished) and I have been totally engrossed in it. Its called 'Will I still be me' and is about a lady who is a psychologist who goes through a heart and lung transplant. There is so much in it that I relate to and so much of it is humbling. She deals with things so well and admits when she is struggling.

Would I recommend this book? Now that is a difficult one. Yes I would, but it would have to be to the right people. The main people who would want to read it would be those on transplant lists and such. But it is a true tale, it says the good aspects, but also some of the bad, like medication side effects and time to get over surgery. It is enlightening reading it, but if you were to read it you would have to force yourself through and not stop when things got dim in the middle.

Speaking of humbeling people, I seem to be surrounded by a lot of them at the moment, kinda really puts things into perspective. From the lady in the bed next to me who has had a breast reconstruction after having breast cancer, she is always smiling and sweet and happy and to hear her joy at looking down at her chest for the first time today.

To the lady in the bed opposite me, who had to have her trach put back in the other day. She is upset about it, I mean you would be, but she also has a lot of other stuff going on. She is physically disabled already but she is her mums main carer at home. Now being a carer is a huge challenge for anyone, let alone someone physically challenged and with a trach. Though, the day after she got her trach put in, her mum had a stroke and all she wants to do is be with her mum not stuck in hospital unable to go help. Amazing how much people can put others ahead of themselves.

I have a few projects that I want to work on, but I do so want to give back something. Instead of relaying on others all the time. Espcially my parents. You know, at their age, I should have an adult relationship with them,  they should be retiring and I should have my own place and call around to help with shopping. Instead, they have to act like parents to a small child still. Encouraging and even doing my laundry, meals and other such delights.

Things are on the improvement, once this all settles down, I am going to get things back in the right order. I want to put together some kinda, images towards tracheal stenosis, kinda promotion/awareness type of things. I have also been in touch with Leeds Liver Transplant support group and have offered to help them with a website. We are in discussion around it at present. I know I need to start off small. Projects that I can manage at my own pace and work up to getting into routines to work.

I have also been doodeling and thinking, I really do want another tattoo. This is pretty much the picture I think I have decided on;

I want the ribbon to be green, for transplant awareness, but not sure on the color of the butterfly. Need to draw it a few more times then digitalise it. The latin underneath, says where the fates bare us. Which is kinda fitting for my transplant, though I have a few other latin pieces that I am undecided on yet. Ideally, I would want it to be on the back of my wrist, but I dont know if I would get the full effect by the time I shrink it. I dont know, I still need to think about it some, maybe even draw it on and such.

Tubes and inspiration

Right now, I feel surrounded by tubes. Kept alive pretty much by tubes.

Tubes to feed me oxygen, tubes to feed inhaled medication, tubes for fluids and IV medication, tubes to feed oral medication. Tubes tubes tubes. I think the hardest thing about tubes is that it is pretty much impossible to feel anywhere normal whilst surrounded by them. Going the toilet? Dont forget to take your drip stand stand with you. HEadache getting to much, put your oxygen back on, chest to dry, pass the nebulizers, medication time and still not able to take oral meds, put it down the stomach tube. Airway not holding open, lets stick a tube in it.

Tubes can be a god send, but at the same time a restriction. They remind you that things are not as they same, they keep you tied down.

My arms are bruised from yesterdays attempts at drawing blood. Today in theatre, they poked and proded and had a couple of attempts to get an IV in, with not much luck. Eventually decided to use gas to put me to sleep. I awoke with an IV running, back of my right hand, not the most comfortable place, but its in. Its also starting to block, but it has been well used. Hartmens, glucose, potassium, saline, morphine, ondanstaron, paracetamol to name but a few.

I have to admit I was slightly disapointed coming around after surgery. I came around shivering like mad, but thats not unusal. Coughing my head off, again normal, and struggling to breathe again normal, but not what I had hoped for. I knew things wouldnt be brilliant right away and yet I still hoped. The machnies kept beeping and my oxygen got turned up. After the initial I feel crap put me back to sleep feeling you always get when you first come around, I settled, until another need made itself known. A need that would cause great pain. I needed to wee. I assume they had pushed a ton of fluid into me and my bladder was busting. I was not doing the whole bed pan thing in recovery, so I grin and bared it.

They wanted to sit me up to help my sats, but there was no way I could bend in the middle. I hoped to go back to my ward soon. As soon as I got back to the ward, I rolled out of bed, again not able to stand upright and dashed to the loo. wow it felt good. what a relief. Then my breathing came back to the forefront of my mind as I realized I couldnt do it to easily. Snuggled back into bed with some oxygen pushing my sats back up from the 88% mark.

Doctor came to see me later on. He tried covering the tube, I managed about 4 breaths before I started to struggle. Hopefully it is still swollen. Tomorrow, I am down for a tube change to a fenestrated tube (hole in the top) and then see if I can cope with that covered.

Fingers crossed again.

I think I might be able to tomorrow. I am already getting a little more voice out.

Its strange though, its as if I can breathe in two differnt ways. The way that feels natural, but leaves me breathless, I assume through the tube. And the way that feels alkward and takes concentration but leaves me able to breathe better, I assume through my mouth. Tomorrow will tell when the easy way gets blocked.

Also I wasnt meant to have a NG (tube in my nose to tummy) but I am still nil by mouth until I get a swallow assesment and as I have night time medication that can not be missed (anti rejection) they had to put it down. Which I hate and cant wait to get out haha. In the mean time I get to look cool with a yellow tube hanging out my nose.

Through all of this, I dont feel as bad as I thought I would. I guess it could be many things, the support of my friends and family, the drugs or even the fact that I seem to be drawing strength from those around me.

I was going to orginally make a post about how I wish people would quit with shoving things up my nose, tubes, cameras etc. But then the lady in the bed opposite me came back from theatre. She obviously has a lot going on cancer wise. She was in theatre for at least 6 hours (eek) looks rough and has tons of tubes. Yet her family came in and though she is obviously in pain (I can see her monitors) she was smiling and making jokes. You could literally feel the love radiating from her area. Kinda humbling really.

I have also been thinking a lot about a lady I heard about in the news the other day. She has 2 kids and CF. She needed a lung transplant, but struggled to get one. Bascially she has lived in the ICU since April this year on a vent. Seeing her child twice a week, waiting to exhale as she put it. She died the other day. Its such a shame. Everything she has been through and for what? All the time waiting and hoping, the family holding on by their finger tips clutching at straws and jumping at every phone call. Only to lose her anyway. Again, you can see the love around the family and my thoughts go out to them right now.

News article

Waiting To Exhale

A whole week!

Ah hello Blogging world. A whole week without my whining, bet that did wonders for your head!

I want to make a post that says Yay I can breathe, walk, talk not have coughing fits. Alas, I am not up to that stage yet so I am unsure how this post is going to go. I have been trying to get online to write it for a couple of days but had major internet issues (T-mobile basically cut my dongal off because it hadnt been used in 30 days! So I had to get someone to phone them, then wait 24 hours to put it on, then another 24 hours because there system is crap and yeah. I now have internet, though it would probably be quicker to run home read the page I am looking at and run back gah)

So I have wrote out a few posts the last couple of days, well mostly written them in my head, and perhaps one on my ipod but still. Not sure how much of those I should post now as things change, so I am going to start at the beginning I think, so this maybe long. (sorry xx)

Mum and Dad were both comming with me this time, in light of it being classed a 'major surgery' so we got the train down.

They only had a double bed in their room and as I refused to go in to the hospital a night early, I had a blow up bed instead. However, I couldnt blow it up (lol) so daddy got the task.

Mum and daddy in their student flat, having tea at the breakfast bar.

So I got to the hospital at the said time (Yes I actually managed to get up, ready and dressed to be at the hospital for 7:30 am!! be proud) To then be told, that I am not on that ward, I need to go up to the next ward. Once there I was told, oh your last on the theater list, so just sit around, it will probably be about 2 when they come for you! Gah, so I didnt have to be up and in so damn early.

Anyway, I spoke to the surgeon and so forth and was preped for theater for 2, which they came, pretty much on the dot.

So I expected to come round a couple of hours later, with perhaps a fiar bit of pain in the recovery room and morphine top ups every now and again. What I wasnt expecting, first off was a social gathering up in the theater. (Darn if I had known I would have dressed for the occasion lol) Apprently a lot of surgeons had come to view the surgery, including some from America. Also Professor Birchell (The one who has done all the research into trachea transplant) was also there and came out to speak to me before hand (He had a yellow flowery bandana on that I had to try not to laugh at) Obviously there wasnt much convo going as they were wiring me up and had stolen my glasses so I couldnt see or lip read, nor talk as they had my arms too.

So anyway, went to sleep probably the fastest I ever have been. I usually love that feeling of fighting it and then just sort of going out, but this time it made me feel like my eyes were shaking so I just had to close them quick and with that I was gone.

Nope I didnt come around in the recovery and in pain (well I might of done but I had no recollection of it) The first thing I remember was being in the ICU and mum saying good bye to me as I was going to have chest physio and go to sleep. Think at this point it was about 9pm, so I had been in theatre and back for a while. I think I must have come around very slowly, as I dont really remember very much till sort of dinner time the next day.

Apprently though, I was my usual stubborn self haha. Firstly, I complained because they had put a NG tube in (through your nose into your tummy) and I wasnt expecting that. I hate NG tubes and the feeling of having stuff put down them really brings back old bad memories. But thinking on it, it was nesscary, I wasnt allowed to eat for a couple of days so they needed a way to give me my meds.

Then I complained about having a catherter, which I hate, but kinda expected. I had a load of blood in my lungs and it was ratteling around a lot. They kept wanting to suction it out, but I refused to let them (I am lovely honest) so I coughed a heck of a lot and body did I suffer for it the next day when even breathing was damn painful. They said I had to sleep sitting up and on my back, so I threw a temper and attempted to get out of bed to lie it down. Eventually, they agreed that I could go half down and lie on the opposite side from my grafts. haha Im such a good patient.

Anyway, I started coming more alert and awake and I thought wow, this is much easier than I was expecting, I am hardly in pain and this is fine, I can deal with this without even trying. Then they took away the continuous morphine infusion that was going into my arm that I hadnt realised and the pain set in haha.

So then I had to have some swallow tests which involved drinking blue food dye whilst they watch it go down on camera. (I was thinking of you all the way through Camcam) It was pretty painful having to swallow while I was still so swollen but it was also cool as the man let me watch the recording afterwards so I could see part of my trachea.

From the time I had had the surgery to the point where I was considered stable, they had been talking about moving me to another hospital. Every time they lessened the oxygen, my sats would drop into the low 80% range and my blood pressure was on a see saw, one minute high one minute low. So to be 'on the safe side' they decided they wanted me in a bigger hospital with access to more docs that they can consult on issues other than ENT.

So they ordered a high dependency ambulance to transfer me to Charing Cross Hospital. They loaded me into the ambulance and hooked me up to their monitors. Took one look at my oxygen levels and decided to blue light and siren it as they really did not want to get stuck with going downhill in the ambulance. (To hold the graft in my throat in place, they have put a closed stent in. Where before, my throat was very narrow above the trach, I could still get enough breath, to perhaps stay consicous from about 5 minutes should anything happen to the trach. With this closed stent, no air can get through at all, hence why I have no voice at all. So if anything happens to the trach, I have no other way of getting air.) So mum and dad had never done a blue light in an ambulance before so they were pretty nervous. It was kinda fun rushing through the centre of London with loud sirens and watching cars dive out the way. Though I was in a little pain. Morphine does not do your bowels any good and stomach cramps can be a bitch when they come on.

So right now I am in Charing Cross Hospital. I have no idea if I need to go back to the Royal throat nose ear hospital for my next surgery or not. I keep asking when I can get out. They tell me, once the stent is removed. Well when is the stent removed? Maybe in about 3 weeks, we shall see how your airway looks and take it from there.

I do have loads more to write, but the pain killers are kicking in and I am pretty warn out.
I think I got about 2 hours sleep last night. so today I have been the non compliant grumpy patient. ha. I refused to wear my anti clot things because they were annyoing me. I wouldnt get out of bed so they could make it because I wanted to sleep. I went back on the stronger pain meds as I wanted to sleep and not be in pain. and yeah, I am having a whiney day.

I shall write more about the good days and bad days tomorrow.

xx

Time for a hair trim.

So blogger has just told me that I am not following any blogs and have no posts to read, even though there is a list of like 20 bloggs on my follow thingy. :s How odd. So if I dont reply to your blogs, its not my fault, google is against me! lol

Im exhausted again. And my plans that I have had all week for an early night have failed, every night!
Liver clinic went fine, all bloods are normal and yep. ENT, well most of the clinic was cancelled as the surgeon was off. So considering I was supposed to see him a fortnight after my discharge in January, I still have not seen him. Its not essential that I see him as I am in London, but it would have been nice to have had some back up with things. Clinic was pretty much a waste of time tbh. The consultant didnt listen to a word I said, I asked him the same thing 3 times and he gave me an answer totally unrelated to what I had said. I asked him about my tube change 4 times before he actually realized I was asking him a question. I mean, I know my voice is crap, but he works in ENT, he should be considerate of this and listen and if he cant hear, then he is in the right department to go get his ears checked!

GP appointment was fine too. It was only a check up on my mole. They dont think it looks 'suspicious' but they dont like the way it is raised. So, given the risks of my meds, I am to keep an eye on it. And keep using the cream on it. If it hasnt gone flat in about 2 weeks, or it changes in any way at all, then I am to go back as I will probably need a referral (though I am already under dermatology anyway so I can prolly just organize that myself) But its all measured and stored on the computer.

So what else is new?!?!
I got bored of my hair. (theres a novelty)
I decided to give it a trim. I wanted to put some choppy layers into it and some more layered shape at the front.

Before

After

The fringe still needs some off. I like having a long fringe as I can clip it back and it looks kinda funky. But I have a feeling for the next 2 weeks + I wont be doing much with my hair. So I have decided to cut it a bit shorter so it dosnt get in my eyes of a night and annoy me.

Oh and finally booked some place for my parents to stay in London. Its student accomodation, so I keep joking with them that they are becoming students again and various other jokes such as you cant teach an old dog new tricks. But the place is just around the corner from the hospital. Not only will they have their own room with a couble bed, TV and Desk, but also free internet! Which is great, but not so great as they dont own a laptop. Which is a bloody shame, but might see if I can find one, like putting my old one back together so that they can at least keep in touch with people at home easier. And because it will provide some nice communication for my mum when she is on her own.

Oh and even more on the plus side, they have their own kitchen, which means they can cook, rather than having to survive on takeaways. And it also means that when I can eat, I can get them to make yummy things like pasta (Which I lived on when I was in ICU with throat issues. Its tasty and filling yet gentle on the throat)

It all feels so real now. I think I am more aware of this surgery than I have been of any of my others. I just hope that I am not going to come down with a bump after it. The first surgery I had after all my major stuff was for an ovarian cyst and an appendicist. I was in pain to begin with, but I took it all calmly and the whole, I have come through worse, this will be easy. It wasnt easy and when I awoke in agony I couldnt push the morphine button enough. My stomach also wouldnt handle food and I just got very miserable and distressed.

The next surgery would have been my first hernia repair. I didnt think much about it, until the night before when I was alone in hospital miles from home when I went into panic. I stayed up the entire night watching films as I couldnt settle. I was afraid it was going to be like the last surgery, but i was nowhere near as bad.. Yes there was some pain, any surgery there is, but I have little feeling in my abdomen anyway from all the surgery so i managed it ok.

Then I had a couple of throat ops, but they were never that painful. My second hernia repair, I went into fairly laid back. Been there done that type of thing. Again it was painful, but I was more aware of what to look out for. The pain was bearable, but I was afraid to cough due to it, so I did end up getting my pain meds increased but it was mainly so I could handle a chest infection that I developed.

They were my main surgical things with a load of throat operations laced in between them all. Most of the time at the moment, when coming around from laser and such, I would have between 4-8mg Morphine, though usually written up for 10. It would depend on how much my body shakes. As odd as it sounds, I can deal with pain to a point, but my body complains and all the usual things like my pulse shoots up and my breathing shoots down. But the worst one is when my body shakes uncontrollably. They were worried once that I was going to have a seizure, but the pain meds settled it.

So I am hoping I can cope with it well and just sleep most of it off. But I am also worried that I will do what I did when I had my cyst out and go into meltdown afterwards and not deal with the pain. So fingers crossed and time to stop over thinking hehe.

busy busy busy

Ah, fun filled couple of weeks approaching. Its going to be tiring.

This week, I have an appointment tomorrow with my thoracic surgeon in my regular hospital, fun eh. Im a little nervous about this. Its not a major appointment and I get to peek at my x ray. But more so, Im wondering if I should mention the whole getting more breathless thing. I know it probably isnt much use as he wont do anything unless it gets really serious as he dosnt want to interfere with London, but it would still be nice to know if I am imagining it or not. But then, do I want to go through with the embarrassment if it turns out to be psychosomatic? Ugh, I dont know, I just need to last 2 weeks.

I also need to get early morning bloods done at some point this week too. Silly tac levels having to be done early, I dont do mornings.

And then I have a solicitors appointment. This is the more tiring one. The solicitors is in the Centre of town and to get in you have to walk up 2 flights of stairs. I struggled with these when my breathing was at its worst, so I have no idea how I will do it this time.

Then we have next week. Monday, I have the nurses out for a tube change. Tuesday I have ENT clinic, if the consultant is actually in this time. And Wednesday I have liver clinic. I usually cope with things that if I have to be up and out and about one day, the next day I keep it low key, but each appointment will mean getting ready, getting to the hospital in town, finding parking (The car park is like £2.50 an hour, which I really cant afford) navigating the hospital and waiting around for about 2 hours before being seen. And of course, mum dosnt like to make the journey all the way into town without making it worth it, so we end up going shopping too.

Ah well, need to start thinking about making sure I have everything in for London. Which reminds me, I need to go to audiology whilst I am at the hospital.

I am at the point now, where I am fed up worrying and thinking and planning for this surgery. I just want it to be here so I can get it over and done with now.

I dont know, there are a lot of things annoying me at the moment and I know my temper is getting the better of me. But this is not an entry to discuss that and to be honest, I dont know how much I can discuss about it.

Anyway, as its 2 am, and I have to be up early in the morning, perhaps I should go sleep.

physical update

hmm
I have spent all evening wondering if I should write this and how to attack it if I do write it.
But I began this blog, in hopes that if someone was going through something similar they would know they are not alone. Mainly I wanted to share my experience with all aspects of it, so I am going to detail it.
However, I want to make it clear to myself and everyone, that this, this isnt a rant or a moan or anything like that. Its just how it is right now.

In my usual hospital, I have gained a bit of a reputation. All of the staff there know me and they all know that if I start to get ill, something needs to be done pretty quick. I am known for going down fast.
Every time I have gotten sick, I have gone from well to needing hospital in 2 days if not 2 hours.
This time is different. Yes I have been feeling tired, but nothing that has overly worried me.

Over the last few days, I think I have started getting more breathless.
Its not much, its not something that would be noticed on a day to day basis.
But when I got back from London, 2 weeks ago give or take, I could walk fairly fast up the stairs. Yes I would be panting when I got to the top, but I would be able to carry on with what I was doing or picking up whatever I had gone up for.
Tonight, I have just walked, fairly slowly up the stairs as I was behind mum, but when I got up stairs, I had to stop and sit down for a few minutes till my breathing settled.

I noticed this a few days ago, but I put it down to being a bad day.
I still am hoping it is/was a bad day.
But in my mind, I'm spotting other things.
The problem is, are these new things real? is my breathing getting worse?
Or am I panicking? Is it stress? Is it psychosomatic?
These are answers that I dont know.

Usually, when walking, if I start to feel excessively breathless, it usually means my inner tube as clogged. I am able to take it out and change it and clean the old one. This has pretty much become an automatic movement, kinda like getting a tissue out to blow your nose. Today, a couple of times, I found myself in the midst of changing the tube, however, when looking at the tube I was taking out, it was pretty much clear, not how I would expect it to look if it were clogged.

When I got home, I thought I would pass a suction tube just to make sure there was nothing blocking the end of the tube just incase. If I am honest, I have been avoiding using my suction. I dont like it, but I dont want to get used to having it, I would rather work on strengthening my cough.

The tube passed with only a small amount of resistance, which is odd as there isnt normal any resistance. But it felt kinda different. It felt tighter, more restricted. However, im not guaranteeing this as a symptom as it has been a while since I passed a tube, so it might just be me working myself into a worry.

I'm not overly concerned yet. As I said it could be all kinds of things. My chest could be too dry, it could be the beginning of a chest infection, it could by psychosomatic, it could be that I am over tired, it could be a whole host of things.

The thought is still in the back of my mind though.
Mum said, that while in London, the surgeon said that my lower airway was also narrowing, as in below my trach tube. I didnt know this was possible and I'm still not sure.
I didnt hear him say it, but then that could be a result of crappy hearing and/or post anesthetic brain.

I have not mentioned this to anybody yet. This isnt something I am overly worried about, sure its on my mind, but there is a lot more ahead of it in my mind.

I trust my team and I know that, should it be something like lower arway narrowing, that they will look after me and sort it. In like 9 days time I have an appointment with my surgeon up here where x rays will be run, the week after that I have an ENT appointment with my other surgeon, then I have London. And worst case, it is bad when I get to london, I will be going to theatre that day anyway so they can get a proper look and sort it. In between that, I can (well mum can) phone my ward or the GP will fit me. And of course there is the option regular people have of A&E., though I am told , where possible to avoid A&E. A&E tend to like to want to fiddle and save the day. They like to do procedures in ressus in the name of stabilizing you or assessing you. Heres where memories of being put on CPAP come flooding back so that the doctors can lie me flat enough to attempt for the 12th time to insert an arterial line. Plus A&E, is riddled with infections, which would be bad right now.

So the plan is, to continue to ignore this. I am pretty sure it is going to amount to nothing and I have back up plans. And I am feeling ok in my head space. I can deal with this. This isnt scary, this isnt forever and things ARE going to improve.